Tag: Residential Care Facility

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“Grandpa’s Great Escape” by David Walliams

I don’t make a habit of criticising other author’s work. I know how difficult it is to write a novel. I know that the beauty of a book is often in the eye of the beholder and everyone has different tastes. What gives me the right to make a value judgment about a novel? However, every so often, a book comes along which leaves me so riled up I’m afraid I can’t keep from being critical. 

I’ve never read any of David Walliam’s kids’ books before. I knew they were incredibly popular – NUMBER ONE bestsellers, according to the cover- and I also knew many of my friends and colleagues in the kids’ book world had reservations about both Walliam’s work and also the increasing popularity of children’s books written by celebrity authors. I’m not going to wade into that argument, but I do think they are voicing legitimate concerns and, if Grandpa’s Great Escape is similar to the rest of Walliams’ work I’d have to say I have huge issues with his lazy and borderline misogynistic portrayal of women, his lazy, cliched, offensive depictions of BAME characters and the slightly snide and sneery way he writes about working class people. Putting these reservations aside for the moment, however, I will attempt to focus on Walliams’ exploration of dementia in this novel.

Dementia is not mentioned by name in Grandpa’s Great Escape but as the novel begins with the line “one day Grandpa began to forget things,” and Walliams goes on to outline how he’s taken to wandering off at night, confusing the past with the present and does not recognise close family members, it’s fair to say Grandpa has developed dementia. The novel’s plot outlines his adventures with his grandson Jack. Swept up in an extended delusion that he’s still living in the days of WW2 when he served his country as a fighter pilot, Grandpa runs away from home, hides out in a spitfire in the Imperial War Museum, is incarcerated in an old people’s home which he mistakes for a Prisoner of War camp, leads a mass break out from the home and eventually steals a spitfire from the Imperial War Museum which he flies away in. The plot is quite frankly absurd, but it is a children’s book and I’m all for wild flights of fancy in literature aimed at both children and adults. The problem here is the tone. Most of the outlandish events are written with such flippancy that the suspension of disbelief disintegrates instantly. Walliams has often been accused of being diet-Dahl but he lacks Dahl’s ability to believe his own magic. The made up stuff feels made up and I doubt it would make it past the discerning imagination of most eight year olds. It is badly written nonsense.

I’d be annoyed if this was all Walliams was offering his readers, but I think Grandpa’s Great Escape is so much worse than a poorly written piece of children’s literature. It’s attempting to address an important issue; presenting a character with dementia to countless young readers who might well have a grandparent or loved one living with the illness. As such, it’s unforgivable. Grandpa’s dementia is like no dementia I’ve ever encountered in almost fifteen years of working in this area. He can’t remember his family, confuses times and dates, forgets things and yet manages to mastermind elaborate escape plans, fly a spitfire plane, enter into complicated conversations and at all times remain fastidiously and neatly dressed in full army regalia. It’s quite clear from this portrayal that Walliams has done no research at all into how dementia would actually impact an elderly man or what effect the condition might have on his young grandson. Furthermore, the depiction of the residential care facility Grandpa’s moved into is terrifying. He’s drugged, physically abused by carers and isolated from his family. If I were reading this novel, as a young person whose grandpa had dementia, I’d be both terrified by the possibility he might be incarcerated in a Colditz-style care home and also full of the false hope that he might make a miraculous recovery from his illness. 

At best this book is badly written. At worst it’s downright harmful and instils a false narrative about dementia. I wish all those children, (or perhaps parents), who’ve made it a NUMBER ONE bestseller had instead picked up one of the amazing books for kids I’ve previously highlighted on the blog. 

Grandpa’s Great Escape was published by Harper Collins in 2015 

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“Surviving Grace” by Trish Vradenburg

The Washington Star review printed on the back of my copy of Surviving Grace calls this play, “a two-hour Seinfeld,” and this assessment seems particularly apt. The play is sharp, funny, fast-paced and in places a little absurd. It centres around Kate Griswald, a thirty something TV producer and her sixty five year old mother Grace. Kate’s life is hectic. She’s too busy for relationships. Her main focus in life is her career. She’s so busy juggling responsibilities at work she actually missed the birthday party where her mother’s confusion begins to become apparent to the rest of the family.

Grace’s Alzheimer’s diagnosis interrupts Kate’s hectic career. Suddenly, she not only has to worry about placating the actors in her sitcom, she also has to look out for her mother and her father who’s struggling to deal with his wife’s decline. The initial sections of the play address several key issues couples have to face when one develops Dementia. Jack, (Kate’s father), expresses his sadness about his wife’s condition.

“She can’t hold on to a thought anymore. Her mind is a sieve. It kills me to see her like this.”

He complains about the way their old friends now avoid them because they’re either afraid of Grace’s Alzheimer’s or don’t know what to say.

“Alzheimer’s is hurting out social life. You know what Mom said. Only family hangs in there.”

He even acknowledges the way the American healthcare system can wreck havoc on a couple’s finances and savings if one of them develops an illness like Dementia.

“The house is the only thing the government won’t take from you to pay for this. No Medicaid until I’m broke. I checked. Fifty-five thousand a year this costs.”

Eventually Jack can’t take the responsibility of looking after his wife. Grace is moved to a nursing home and Jack finds himself a younger girlfriend. He chooses fun and excitement over responsibility and leaves Kate to pick up the pieces. The play moves away from the traditional Dementia narrative about half way through. Grace is placed on a programme of experimental, (and completely fictional), new drugs which reverse the symptoms of her Alzheimer’s. She begins to recover her language skills and her memories. She shocks her family by informing them that she’s been cognisant and listening to everything they’ve said over the last few months. She wants to use the time she’s be given to travel and enjoy herself. Having gained a taste for the world beyond her nursing home, Grace refuses to return from her travels and without the Alzheimer’s-blocking drug regime, begins to decline for a second time.

Surviving Grace is a funny, intriguing, irreverent look at a family dealing with a Dementia-diagnosis in a truly unique way. Not every theme is developed fully and I’m still not entirely certain what Vradenburg hoped to achieve with the inclusion of a miracle cure. Yet, it raises lots of questions about consent and responsibility. It made me laugh in several places and offers an interesting alternative to the usual nursing home experience. It even includes a bit of romance.

Surviving Grace was published by Broadway Play Publishing Inc. in 2003. 

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“A Chronicle of Forgetting” by Sebastijan Pregelj

Translated from the Slovene by Rawley Grau

Slovene novelist, Sebastijan Pregelj’s slender novel, A Chronicle of Forgetting is a beautifully written book, expertly translated by Rawley Grau. The prose is clean and elegant, allowing Pregelj to experiment with hidden meanings and images inherent within the text. The novel is set in a Slovene nursing home and focuses upon a small number of residents and staff members who we see through the eyes of one elderly male resident. It is divided up into four sections, including an opening section narrated by the main protagonist at his own funeral and a final section narrated by an unnamed carer who might be representative of the man’s inner life. The novel closes with this haunting statement, delivered over the man’s deathbed. 

“You are what has happened and what is yet to come. 

You are life as it is.”

Perhaps these words can be read as a kind of key which unlocks the entire novel. This is a book where time itself is extremely fluid. As the narrator’s Dementia develops, he slips backwards and forwards in his reminiscences. His past life and regrets blur with the present as he attempts to make amends for the mistakes he’s made. At times it’s unclear whether these grand gestures have actually been made or are simply plans the man is making for a future he might not live to see. He enjoys a romance with an elderly female resident though it’s also unclear if this only takes place inside his head. As the novel progresses, he -and by proxy the readers he speaks to- becomes increasingly confused between reality and imagination. There are several occasions within the novel where he might be experiencing visual and auditory hallucinations, common to certain types of Dementia, or he might be narrating a real experience. I enjoyed the way Pregelj refuses to patronise his readers and leaves the interpretation up to them.

Some of the classic tropes of Dementia narratives set in care facilities are absent here. There’s very little evidence of residents being infantilised. In fact, the narrator goes out of his way to emphasise his independence and the good relationships he has with staff members. He does talk at length about the physical aspects of ageing and deterioration. He describes the effects old age has had on his body including weight loss and incontinency. I was also glad to see one of the first explorations of sex between older people living with Dementia I’ve come across during my reading. However, Pregelj avoids language loss as an associated issue. The narrative voice is strong and coherent throughout the text. 

As the title would suggest A Chronicle of Forgetting is primarily a book concerned with memory; how memory is lost, what we remember and how accurate our memories are. It’s a beautiful, meandering gentle read which left me more hopeful than most Dementia narratives do. There’s a real sense of urgency running through this narrative. The man is not naïve. He knows he’s losing his grasp on reality, but he chooses not to panic and to make the most of every minute he has left. 

“Forgetting will swallow up my memories, bit by bit, until eventually I forget who I am, where I came from and why I’m here. But before that happens, I hope that for a few moments I’ll be able to put the world around me out of my mind and, without fear, sail away to somewhere else.”

A Chronicle of Forgetting was published by the Slovene Writers’ Association in 2019 

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“Take Care, Son – The Story of My Dad and His Dementia” by Tony Husband

Cartoonist Tony Husband turns his attention to a subject very close to home in this slight, but charming book which chronicles the final years of his father, Ron. We follow Ron’s journey from a Dementia diagnosis right through to his death. Told from both the perspective of Tony and his father, the story reveals the close relationship between the two and the way this relationship is significantly impacted as Ron’s Dementia takes over his life. At first Ron is able to continue living with a degree of independence. The opening sections of the book allow the reader to find out a little more about his lifestyle, family and history. He seems like a larger than life sort of man. As the story progresses Ron becomes more and more confused about his own present condition and eventually moves from the family home into a residential care facility. 

The small snippets of first person narrative and the illustrations which accompany each page give the reader a real insight into the practicalities of Ron’s decline. He laments the loss of his independence when his car is taken away and is heartbroken to discover his dog, Lossie won’t be able to stay with him in the nursing home. However, Husband is quick to point out that the move into residential care hasn’t been an entirely negative experience for his father. Ron enjoys the company of his fellow residents, the entertainment that’s laid on for them and even manages to start a new relationship with a fellow resident. He’s also delighted to discover that Lossie is welcome to come and visit. The dog proves incredibly popular with his new friends. 

Take Care, Son doesn’t go into an awful lot of depth when it comes to exploring the Dementia experience. But what Husband records is very familiar and resonates particularly strongly because each little thought and musing is accompanied by a gorgeous illustration which adds a lot to the telling of a familiar story. I also felt the sections offering the reader a glimpse into Ron’s personal thought life were really clear, insightful and loaded with meaning.

“My memories were confused, jumbled… nothing made sense, the world I knew was disappearing, it didn’t make sense and I presume I didn’t either.”

However, my favourite thing about this short book was the tone in which Husband tells his father’s story. It reads like a warm and deeply respectful conversation between a father and son who really love and care for each other. There’s so much respect and dignity implied within this story that even, in the final few pages when Ron talks honestly about facing death and Tony confronts the loss of his father, the narrative felt sad, but not unbearably so. This is a testament to a life both well lived and concluded with dignity. The whole book is shot through with little nuggets of hope and joy. 

Take Care, Son was published by Robinson in 2014 

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“Tamar” by Mal Peet

Guardian Prize- winning author, Mal Peet won the Carnegie Medal for Tamar and it’s pretty easy to see why. His YA novel is an epic read, spanning fifty years of history and three generations of a complicated family. It’s a big book but I read it in less than twenty four hours because I simply couldn’t put it down. If you like historical sagas with plenty of action, you’ll absolutely love this book. It focuses on Tamar, a young fifteen year old woman who, after her grandfather’s suicide, attempts to unravel his complex past. Peet then uses flashbacks to 1944 to reveal Tamar’s grandfather’s side of the story and introduce the people and events which shaped his life. 

It transpires that Tamar’s grandfather was an undercover agent for the allies, operating in the Dutch resistance during the latter part of World War 2. As Tamar discovers more and more about his past, she begins to suspect that he wasn’t the man he purported to be. In normal circumstances she might have asked questions of her grandmother, the women who’d escaped from the Netherlands with her grandfather in 1945. The two of them had spent the remainder of their lives in England, yet never quite managed to shake off the past. However, Tamar’s grandmother has developed Dementia and can’t offer her granddaughter any help in unravelling the fifty year old mystery of who her grandfather really was.

I’ll be very honest. There are only a few chapters of Tamar which deal explicitly with the grandmother’s Dementia. It’s mostly a kind of historical fiction thriller with a tiny bit of romance thrown in for good measure. It’s a brilliant story, exceptionally well-written and I’m grateful that the inclusion of a Dementia narrative made me pick it up and read it through. The sections which focus on Dementia might be slim but they’re very well-crafted and capture a couple of aspects of the illness I haven’t seen explored in many novels so far. Marijke (the grandmother), is a Dutch speaker who learns English late in life, “her English had never been perfect like Grandad’s. She’d often search for the word for something, clicking her fingers impatiently, then give up and use the Dutch.” As her Dementia develops Marijke loses her English and defaults back to her native Dutch. No one in the care home she lives in understands her. They do, “what English people do when they speak to foreigners: talk slowly and loudly in English, and mime.” 

I’ve not seen this concept of defaulting to a primary language included in any Dementia narrative I’ve read so far, though I’ve witnessed it a few times in community arts practice when working with people living with Dementia who’d spoken Irish or another language before they learnt English. I also noted with interest Marijke’s attempts to hide food from her carers; a throwback to her youth, when she’d hidden food from the Nazi’s who’s overran their neighbourhood. This is another practice I’ve witnessed amidst people living with Dementia.

Peet’s description of Marijke’s Dementia is uncannily accurate and well-observed. The loving and gentle descriptions of how Tamar’s grandfather enters into his wife’s confusion as a means of reassuring her, are worth the read alone. This is why I’m including Tamar in my collection of Dementia narratives. There are only a few chapters featuring the older version of Marijke but they’re substantial enough to make this novel an essential inclusion, not to mention, a fantastic read.

Tamar was published by Walker Books in 2005 

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“Malcolm Orange Disappears” by Jan Carson

Summarising a book you’ve written yourself is a difficult and quite disconcerting thing to do. Malcolm Orange Disappears was my first published novel and, whilst I’m still quite fond of it and certain characters who appear within its pages, six books later, I can definitely see where it could be improved. The story focuses upon eleven year old Malcolm Orange, whose father has abandoned the family in Portland, Oregon. As he attempts to process this troubling situation Malcolm begins to notice he is, quite literally, disappearing. Malcolm’s mother has found a job as an orderly in a retirement village which comes with accommodation. As Malcolm settles into his new home he begins to befriend the elderly residents and together they go on a quest to stop him from disappearing.

Malcolm Orange is a magical realist text which uses metaphor and allegory to explore the various ways the older people in the retirement village feel as if they too are beginning to disappear. The loss of memory is explored at length. Many of the residents are living with Dementia and can’t remember important parts of their own stories. Malcolm and his friend Soren James Blue help the residents to form a kind of support group in order to capture one aspect of their history before it disappears.

“The People’s Committee for Remembering Songs existed solely for the purpose of remembering songs.” It meets several times a week and allows the residents to collectively recall the important songs which have shaped their identities. This section of the novel takes an imaginative look at how community and creative group exercises can, at best, help to slow the advance of Dementia and also help participants to find a sense of support and solidarity in being with others who are going through a similar experience. There is a particularly poignant scene towards the end of the novel where the residents all sing together in unison and experience a kind of miraculous release which doesn’t remove them from the realities of the illness but allows them to feel free and powerful as autonomous individuals. Much of this section was inspired by my own experience of volunteering with an Alzheimer’s Society, Singing for the Brain group.

“Emboldened by the miracles unfolding in every corner of the Treatment Room, the People’s Committee for Remembering Songs whooped and hollered, raising their wrinkled chins and hands in anticipation of further healing. The noise was deafening.”

As mentioned above Malcolm Orange is far from a perfect novel but it does give some interesting insight into how ageing, and in particular Dementia, is viewed from a child’s perspective. It explores the use of Dementia as a literary device for introducing fantastical elements into a story and also touches upon issues of sexuality, disability and autonomy in regards to those living with Dementia within a residential care environment. I hope it also advocates for the power of story in attesting to who a person living with Dementia once was and continues to be. 

Malcolm Orange Disappears was published by Liberties Press in 2014 

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“Wrinkles” by Paco Roca

There are so many ways to tell a story and just as many avenues for engaging a reader. An issue as diverse, wide-ranging and various as dementia will require the whole gamut of an artist’s creative ability as they seek to find effective means of telling a story that isn’t their own. Spanish author, Paco Roca was one of the first to record the dementia experience in a graphic novel. Originally published back in 2007, Wrinkles was later translated into English and republished. Wrinkles follows Ernest, an older man, living with Alzheimer’s disease as he is admitted to a residential care facility and at first struggles to settle into his new home.

We see the residential care facility and the residents themselves through Ernest’s eyes as he’s given a tour of the building and begins to join in with daily activities. The visual aspect of the book allows Roca to be playful with how he interprets Ernest’s gaze. Some images give us a realistic idea of what Ernest is seeing, others allow us an insight into the mental associations and memories his brain is dredging up as he tries to process his new surroundings and friends. Roca’s images also add a layer of humour to the text. One page features eleven almost identical illustrations of older people dozing beneath a clock as time progresses from morning to night. The final cell on the page depicts Ernest being asked if he’s had a good day. The visual is kind of like an illustrated joke and also effectively conveys the monotony of nursing home life much better than any phrase or sentiment could.

Roca also leaves space between his illustrations in order to convey the idea of memory and language loss and also the notion of endless, unstructured time. Not everything is said or stated because, with dementia, not everything can be quantified or expressed in words. Towards the end of the book Ernest’s Alzheimer’s develops and more and more cells are left without speech bubbles. We see Ernest still present even as his ability to communicate gradually begins to disappear. On the final pages of the book Ernest’s features are entirely removed from his face and we’re left contemplating the troubling image of a man whose identity has been removed by the illness he’s living with. Though Roca deliberately includes a final page of images -Ernest present in past memories- I’m not sure I agree with the way he’s depicting a person living with dementia in the final stages. The message he’s conveying seems to be Ernest is no longer Ernest; his only meaning is to be found in his past.

The author spent a great deal of time visiting retirement homes, observing and talking with residents as he researched this book. The results are stunning and very effective. There are moments when it’s impossible to convey with words, exactly what’s going on in the mind of someone living with dementia. In Wrinkles, Paco Roca has shown how visual images can often speak volumes when words begin to fail.

Wrinkles was published by Knockabout Limited in January 2015

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“Hour of the Bees” by Lindsay Eagar

Hour of the Bees is Utah-based YA writer, Lindsay Eagar’s debut novel. It’s a captivating story about a family spending a summer together on the sprawling sheep ranch which has been in their family for generations. The story centres around twelve year old Carol. At first Carol isn’t at all keen to give up her entire summer holidays to spend time with her grandfather, Serge on a sheep ranch in the middle of nowhere. Carol, her half-sister Alta, and little brother Lu are used to their life back in the city, with their friends and all the comforts of home. There’s absolutely nothing to entertain them on the sheep ranch, worse still the whole area’s been subject to a drought for decades and the summer months are unbearably hot. Carol and her family don’t really have a choice in terms of where they spend their summer. Serge is extremely elderly and has grown frail. His advancing dementia means he’s increasingly confused, mixing the past with the present and sometimes even mistaking Carol for his late wife as a girl. Serge is moving to a residential care facility at the end of the summer and the family have only a few months to get the ranch fixed up before it’s put up for sale.

Eagar weaves a beautiful magical realist story through the more familiar story of a family struggling to cope with change in the present and resurfacing hurts from the past. Carol grows close to her grandfather as he tells her a long and enchanting fairy tale about her families origins. She comes to understand that her roots and identity are tightly bound to the ranch and ultimately begins to empathise with Serge’s insistence that the land should stay in the family and not be sold to strangers. It’s a beautifully written story and a really enjoyable read with strong emphasis on the importance of listening to older people and valuing family connections.

However, I really struggled with the dementia narrative in this novel. Serge’s dementia feels like a kind of device used to propel the plot. He’s portrayed as confused and frail when the story requires him to be an object of pity or a bone of contention, grating up against the family’s plans. At other points he’s almost miraculously coherent and portrayed as quite strong and virile for such an elderly man. For example, though he frequently finds communication difficult he’s able to narrate, long and extremely eloquent stories about his past. I understand that the magic realist narrative running through the novel allows for a certain amount of liberty to be taken with how the characters are portrayed but I’d be a little concerned that young people with no experience of dementia who read this novel might not get an accurate idea of what the illness is actually like. Eagar, also weaves in a semi-miraculous happy ending for Serge and Carol which is very different from most people’s end of life experience with a loved one who has dementia. It’s an ongoing struggle when reading and writing fictional dementia narratives. The characters need to be written accurately and ethically and yet are also there to serve the story. For me, the balance isn’t quite right in Hour of the Bees, but it’s still an enjoyable read. 

Hour of the Bees was published by Walker Books in 2016 

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“I Remain in Darkness” by Annie Ernaux

Translated from the French by Tanya Leslie

This slim volume was my first experience of the French author Annie Ernaux, a writer I’ve been intending to read for quite some time. This particular book has been namechecked in so many essays and articles I’ve read in the last few weeks it felt like the perfect opportunity to begin my reading relationship with Ernaux. I enjoyed I Remain in Darkness so much I have already ordered several more of her books. The writing is razor sharp, analytical and incredibly well-observed. Though it’s often painfully focused on the banal, repetitive and unpleasant aspects of watching a loved one’s journey with Dementia the language is so beautiful and each word so perfectly placed it still reads a little like prose poetry.

“My mother’s colour is fading. To grow old is to fade, to become transparent.”

Chronicling a period of four years, Ernaux sketches small intimate portraits of moments with her mother as an Alzheimer’s diagnosis gradually takes over her life. She’s moved from home into a residential care facility where Ernaux visits her frequently and also give us snapshots into the lives and experiences of the other residents. Much is made of the way Dementia removes privacy and autonomy. This is mostly viewed as a negative consequence of the illness. However, Ernaux also effectively explores the interdependency of the carer/cared for relationship. At times she seems to relish the closeness she’s found in being so intimately involved in her mother’s everyday life. She weaves in allusions to her own childhood, when her mother cared for her, the relationship she has with her two children and the way she is now caring for her mother like a child. There is a sense that this interdependency is both natural and at the same time shameful; that people are designed to care for each other, yet the harsh realities of caring are not something to be openly talked about.

“His mother too is suffering from Alzheimer’s; he talks about in a low voice, he is ashamed. Everyone is ashamed.”

Again and again Ernaux writes of her reluctance to write about her mother’s illness so honestly as if, in doing so, she is violating trust. And yet she cannot stop herself. Her own story is so closely tied to her mother’s story in order to understand herself she must explore her mother’s experience. At one point she goes as far as to say, (of her mother’s body), “the body which I see is also mine.” More than any other first person account I’ve read so far, I Remain in Darkness, seeks to place the carer, (and by default), the reader in a position of intimate empathy with the person who is living with dementia. As such it is a deeply upsetting but essential read.

I Remain in Darkness is a meditation on ageing, family, loss, love and memory which does not shy away from recording the more troubling aspects of Dementia. There is an ongoing focus upon the indignities associated with the illness as Ernaux observes her mother losing both her mental and physical capabilities. There is also humour present here, warmth and an attempt to explore both the present and past self of a person living with Dementia. A lot is left open to interpretation and there’s no attempt made to neatly join up the dots or offer a comforting resolution in the closing pages. As alluded to in the title, Ernaux and her mother remain largely in darkness throughout the book, struggling to find each other in the dark. I felt equally lost at times, yet relished the chance to glimpse what life might be like for a person living with Dementia who is constantly trying to find herself. I would recommend this book as an important read.

I Remain in Darkness was published by Fitzcarraldo Editions in 2020

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“There but for the” by Ali Smith

In true, and glorious, Ali Smith style, There but for the is a novel narrated from multiple perspectives, seamlessly weaving various timeframes, memories and characters together as their stories pivot around a central linked point. The pivotal point here is a dinner party gone dreadfully wrong. One of the guests, an almost stranger named Miles, excuses himself from the dinner table. He proceeds to lock himself in the spare bedroom and refuses to come out. Various characters are introduced into the story, helping to flesh out the life which has led Miles to this point. 

The point of the novel, as is often the case with Smith, is not stringing the reader along until they arrive at the big reveal moment when the whole locked room mystery will be revealed. Ali Smith is a much better writer than this. The point is that in getting to the point, or perhaps not even getting there, the reader relishes the journey and the opportunity to try on each character’s unique perspective and walk a chapter in their shoes. Thus, the plot device, though clever, always feels a little subsidiary to the incredibly well-crafted characters and the subtleties Smith weaves into each of their voices. This is a book about living and being and the way people’s lives crash into each other and how these crazy encounters are meant to be enjoyed not analysed. 

Around half-way into the narrative Smith introduces the reader to May Young, an older lady living with Dementia in a nursing home. May’s chapter is narrated in a close, and very intimate third, with much of the observation coming from what May calls, “the confines of her head.” It’s a very well-written exploration of how it must feel for someone living with Dementia during that strangely liminal period, when May is still aware enough to know something’s gone wrong with her mind, yet is already losing elements of her own autonomy. 

There’s a tremendous amount of physicality to Smith’s depiction of May. May is constantly narrating the movements and presence of her own body as if observing it at some distance. She is clearly struggling to situate her sense of self as attached to her own body when she thinks about the hospital band, digging into her wrist. 

“Well, but it was sore enough, that wrist on the bed, to be her own wrist, no stranger’s wrist after all, there where the plastic bit into it.”

Smith also explores the blurring of time within May’s head as she confuses a young visitor with one of her own children and talks about being overwhelmed by the memory of the three of them, frozen at particular points in their development.

“All three of her children ran about in May’s head in colour turned up too-high, on a throbbing green lawn bordered with throbbing yellow roses.”

May’s confusion extends to her own story. She’s trying to get the order of it straight in her head; to understand the implications and consequences of everything which has happened in her life. It isn’t easy. Dates slip and facts rearrange themselves. The story comes out back to front and in the wrong order. It’s a very believable account of Dementia. Ali Smith’s style of writing sits well with the fractured linguistic tics, the repetitions, questions and word associations which might be seen as typical of a person exhibiting the early stages of Dementia. May’s chapter exists as a microcosm of the themes running through There but for the. Yes, the reader wants to understand the story she’s telling. There’s a desire to pin down the narrative. But the true joy of May’s story is in the telling; in the getting to the point. Fractured, fumbled, shot through with humour and strange digressions, her elliptical narration gives the reader a wonderful insight into the workings of her brain and the sort of complex and wonderful person May Young is. 

There but for the was published by Penguin Books in 2012